Help for Families of Children with Down Syndrome

When Jill Rose held her newborn daughter Sophia in 2010, the baby seemed unusually limp. “That’s common for babies with Down syndrome,” Rose said. “They don’t have the same muscle tone as typical babies.” That was the first of many new things the young family was to learn. “We were completely unprepared,” she remembers. But they did know one thing: “We knew we needed help right away, but I was so clueless, I couldn’t even figure out what to Google.”

Jill, who lives in Crozet, is a videographer and her husband, Tim, is a nurse. They also have a son, Bodhi, 11. In early testing at the hospital, they learned that their daughter had escaped the heart problems that often occur in babies with Down syndrome, and that was a relief. Nine years later, almost to the day, she looks back on those confusing first hours. “I found out the term I was searching for on Google is ‘early intervention,’” she said.

She not only learned about early intervention, but she discovered that veteran parents were delighted to share a host of practical measures, health tips and educational ideas: “Every day, there was a question,” she remembered. “For instance, if you have a child whose muscles can’t keep her upright, how do you put her in a high chair to eat?” She found out from other parents that you pack towels all around the baby for support.

The Roses discovered there were families in Albemarle County who met from time to time to share information and have fun with their kids. “We were pretty casual about it,” she said, “but it meant a lot to all of us.” The group didn’t have a systematic way of finding new parents of children with Down syndrome, so they were very pleased when the larger Richmond group, the Down Syndrome Association of Greater Richmond, reached out to them with help. Now, new mothers and fathers in Charlottesville and Albemarle County get support and information from the start, and there are funds available to help children explore special interests with classes in activities like dance, horseback riding, music and art.

An upcoming event, “Step Up for Down Syndrome Charlottesville,” on March 24 is designed to raise funds for these ongoing benefits, attract families needing support, and educate the public about the syndrome that affects more than 1 in 700 children. “And it’s also just to have fun,” said Rose. The community has “stepped up,” with Blue Toad Cidery hosting and pouring cider, Blue Mountain and Carpe Diem food trucks dispensing meals and donuts, local artists painting faces and musicians playing. There’s also a raffle and silent auction. The event, scheduled for 1 – 4 p.m., is free, although organizers suggest online registration for planning purposes.

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